Norwegian Porphyria Registry

First published 01/02/2024

Last updated 28/11/2025

Data source

Human

Disease registry

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Record completeness

Administrative details

Data source ID: 47555

Name of data source: Norwegian Porphyria Registry

Data source acronym: Norwegian Porphyria Registry

Data holder: Norwegian Porphyria Centre (NAPOS)

Data source type: Disease registry

Main financial support: National, regional, or municipal public funding

Other

Care setting: Hospital inpatient care

Hospital outpatient care

Primary care – GP, community pharmacist level

Primary care – specialist level (e.g. paediatricians)

Secondary care – specialist level (ambulatory)

Data source qualification If the data source has successfully undergone a formal qualification process (e.g., from the EMA, ISO or other certifications), this should be described.: No

Data source website: https://www.kvalitetsregistre.no/registeroversikt/norsk-porfyriregister/

Contact details

Åshild Rostad Enes porfyri@helse-bergen.no

Main

porfyri@helse-bergen.no

Data source regions and languages

Data source countries: Norway

Data source languages: Norwegian

Data source regions: Agder

Innlandet

Møre og Romsdal

Nordland

Oslo

Rogaland

Troms og Finnmark

Trøndelag

Vestfold og Telemark

Vestland

Viken

Data source establishment

Data source established: 15/06/2002

Data source time span: First collection: 15/06/2002
The date when data started to be collected or extracted.

Publications

Data source publications